What’s it like being at work with a long-term illness?

A long-term illness can seriously impact you in all parts of your life, especially when it affects your ability to work.

When you’re sick, you will more than likely take a few days off work to recover. You can return feeling refreshed, catch up on the time you lost and more than likely thank any colleagues who covered for you while you were off. It’s usually relatively painless to take a few days off, or even a week or two if you’ve been hit with a really bad virus. After all, it’s temporary and short-lived in the big scheme of things.

But what if it’s not a short-lived illness? What if you’ve been hit with a major, long-term illness that is likely to affect you in much bigger way for months or even years? That was the case for data insights analyst John Kennedy, who suffers from two long-term illnesses.

“I’m currently in remission from stage 4 bone marrow cancer (diagnosed a day after my 40th birthday in 2017) and as a result of being treated for that/investigated for symptoms, it’s also been surmised that I have a mild case of ME/CFS.”

ME stands for myalgic encephalopathy and CFS stands for chronic fatigue syndrome. These often result in severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, and poor memory and concentration. “While I’m currently working and able to keep a relatively normal life, I am in danger of slipping or crashing if I overexert myself, mentally or physically,” said Kennedy.

Two long-term illnesses might sound like a particularly tough hand to be dealt and that certainly is the case. However, as Kennedy pointed out, without one the other might have been undetected for longer and become far more serious.

“It’s so strange how it transpired. Without the ME, I never would have known about the cancer until much later (it was 35pc of my bone marrow when they got results back). Without the cancer, I may have not taken so much time away from work and could be in a very different place with the ME by now.”

Kennedy said the ME is far more problematic for his working life than the cancer at the moment. In fact, over the last two years since his cancer diagnosis, his working life has slowly improved and he is now back in college to further his education. However, due to ME leading to sudden crashes, it can still be extremely disruptive.

“It’s like having a very persistent flu that takes over if you run yourself down. If you don’t get enough sleep, too much working or moving (or, strangely, not enough in some cases) or too many stressful situations, it can bring on the usual gang of symptoms,” said Kennedy.

“Symptoms include heavy arms; weak legs; head cold; numb feelings in hands, feet and face; headaches; back aches; and random temperature differences. If I don’t pay attention and heed these, it will lead further and further, where it can get to bone tiredness, not being able to process much, lack of concentration and brain fog.” He now finds it easier to understand his limits and, with the help of a very supportive partner, is able to gauge how much he has improved. However, he is constantly aware of the relapse potential.

John Kennedy with his partner Katya. Image: John Kennedy

Long-term illness at work

When it came to informing his employer, Kennedy was very open with his line manager from when he started getting symptoms up to his initial cancer diagnosis. He then had a meeting with a senior manager and HR before beginning treatment.

“I’ve also been very lucky with my job allowing me the time off to recover and that I was able to come back on a part-time basis late 2017, working back up until I felt able to resume full-time in 2018. I was never pushed or bothered in respect of coming back and any time off to deal with crashes or the many doctors’ appointments during the first year have been auto-approved – they have been exemplary in every aspect of giving me time to heal,” he said.

While Kennedy said similar procedures at work would have happened with or without the cancer, due to the severity of the ME symptoms he has noticed that he regularly has to explain the ins and outs of ME to people as it’s such an underreported and misunderstood disease. “It’s something quite serious, as being opposed to just ‘being tired all the time’,” he said.

Due to a department restructure, Kennedy changed manager and team while undergoing treatment and said he received the same level of compassion and understanding. “My new manager regularly checked in to see how I was doing, and I was never under any pressure to supply updates,” he said. “I was back in full-time employment by January 2018, and they continue to support me with medical leave days for the immunology maintenance treatment I’m undergoing or visits to my ME consultant.”

Kennedy said as he has improved, work has become much less of a stress or worry. “I’m no longer missing two or three days at a time, while suffering symptoms that I can only describe as a horrid, uplifting flu, closer to glandular fever.”

A long-term illness can be extremely debilitating for someone and that’s before they even consider the implications on their working life. After all, when it comes to your health, work should be the last thing on your mind, and yet due to financial implications and how much work is a part of your life, it can often cause additional worry. But with the right procedures in place and understanding mangers, your road to recovery can be made that bit easier.

Jenny was the Careers Editor at Siliconrepublic.com up to June 2019 and was later appointed Deputy Editor in 2020. When she’s not writing about the science and tech industry, she’s writing short stories and attempting novels. She continuously buys more books than she can read in a lifetime and pretty stationery is her kryptonite. She also believes seagulls to be the root of all evil and her baking is the stuff of legends.

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